Recent content by anitabean

Thank you, Lori. I have my fingers crossed that Macdonald's may still have a source for the quinidine. We also used Macdonalds recently to get high-dose injectable vitamin B12 for Michael, recommended by ALS Worldwide. Had hoped it would have positive effect, but so far, no real evidence of any...

Thank you, Lori. Dr. Briemberg told us that the compounded version of Neudexta is no longer available because one of the ingredients used to compound it is an older no-longer-relevant drug that the manufacturer has stopped making. Are you working from a past supply, or did I somehow...

Thanks very much for sharing your experience. That really does give us hope. Michael's speech has worsened since his last 3-month check-in at the ALS Clinic, but it helps to know this may not continue to be a steady decline, or at the same pace. It is so strange how this disease takes a...

Thanks for sharing your experience. Michael, too, finds it hard work to force enough air out to speak. It definitely tires him.

Thanks for the advice about Nuedexta, Laurie. Michael has his 3-month follow-up with the neurologist very soon, so we want to talk with her about various possible options. I also appreciate your thoughts on not putting too much emphasis on these voice databank recordings. It has created some...

Thanks, Laurie. Yes, Michael has bulbar onset PLS, not ALS. At least as far as the neurologist at the ALS Clinic can determine at this time, based on the (relatively) slow progression he has experienced. But she said he'll have to go four or five years more without lower neuron involvement...

My husband was diagnosed in June with PLS. He had mild speech difficulties (slurring when tired) starting a year prior that have progressed since. He is increasingly nasal and slurred; he must speak each word slowly to be understood. He now has some toe drag with each foot and needs a cane for...